Ooops, where does the time go?

Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.

After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I've been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.

Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.

On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.

Tomorrow is Father's Day, and I think I'll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.

Here are a few lyrics of a song I was listening to while writing this post ~

Life is a carnival
It's in the book
Life is a carnival
Take another look

When things get serious, it's time for some silliness!

After today, and for some unknown reason, I'm feeling a but childish tonight! When you get through reading this update, you will probably think I've lost it. After five years, actually 64 months, nothing about this whole ordeal will EVER get me down. I say that with complete confidence, it will not!

First off, while searching for another video I ran across this classic. This is back from the days when cartoons were cartoons. Enjoy, perhaps it's inclusion here will make more sense if you first read further.



Today, if nothing else, should be described as a whirlwind. At 9:00am we had an appointment with my Radiology Oncologist and by this afternoon I had already completed my first radiation treatment. I guess some details would help?

First, before I forget, the steroids are working, I went 19 hours between doses of pain pills! Better ye,t the steroids did not keep me awake last night, I slept for seven and a half straight hours!

Our meeting with Dr. S was great, as I've said here before, we have been lucky to have always found wonderful doctors throughout this whole journey. Dr. S is another example. Initially, he spent 45 minutes going over the details of the MRI. I created a picture on my iPad to illustrate what I am about to share. Please look up at the title of this post if you have any doubts about the quality of the picture!
Here's what you are looking at and what we discussed. This is my legs and torso, my femurs are black, my bladder is red. I'll start with the bladder and the green meanies. The green areas are swollen, cancerous lymph nodes and this is not good. They are not only pushing against my bladder but they are pushing against nerves and muscle and hence, the source of most, if not all of the severe pain I have been experiencing as of late.

The gray areas on the bones are also tumors. According the Dr. S the areas further down the femur on the left in the picture (my right side) and the circle on the right side in the picture are of less of a concern. That's easy for him to say! If you think they look pretty scary in this wonderful illustration, you should see them on an MRI image! Mary and I, as you could guess, were more than a little shocked. The areas at the top of both femurs were almost as concerning, for another reason. Due to the amount of weight, stress and rotation in this area they are very susceptible to fractures and as the right side of the picture shows, I got some problems!

The good news in all of this, and believe me, there is good news, is that there were no fractures. On top of that Dr. S is 100% sure he can kill all of the cancer in each of these three areas. This will also only take thirteen radiation treatments, each only lasting about 8-10 minutes each day, and I already had one today.

A word of caution however, killing 100% of the cancer in these areas only means the cancer in these areas. It is not able to kill the cancer cells in my prostate, the area in my ribs nor all the other micro-metastasis that may be in other areas.

It also probably means my disc golfing days are over, at least for the next 3-4 months, but perhaps for good. I will be walking, keeping score and joining the gang and hope to return to doing atleast that much by mid-July. Yes, Mary, I heard him, I have to be very cautious!

Turn the page

During last month's Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we've experienced with ease. Other times it becomes too emotional.

Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.

On a daily basis I guess in some ways I forget everything we've been through. When I lay it out like I did this evening, and tell 'our story' it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.

I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.

First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?

Only time will tell, fortunately, time in this case, is less than 12 hours.

Anyone know how to reach Kreskin?

First off, do any of you remember Kreskin? He was a psychic that occasionally appeared with Johnny Carson on the Tonight Show. He could predict events, bend things with his mind and tell the future.

I could use a bit of his foresight right now. Tomorrow at 3:00 we will meet with the oncologist to review the MRI I had on Friday. This is perhaps the most anticipated test since the beginning of this whole ordeal five years ago.

The pain ns my hip has definitely become more manageable for the most part. Since starting the pain medication last week, things have gotten considerably better. There are still incidents several times a day. I have been able to sleep fairly well each night followed by a rather normal day until late afternoon. Some days, like yesterday I might even make it as long as 9-10pm before I have an 'event'. Other days like today,itt happens between 3-5pm. I have been rather religious about taking the pain medication every 5 hours so it's not like the lack of medication brings it on. Also, I have been all but inactive so it's not like some physical action brings it on. For the most part, these pain events last an hour or more during which I cannot find a way to get comfortable. The pain leads to muscle spasms which then create muscle fatigue and other related pain.

This is probably a lot more detail than necessary but I need to share, it helps the time go by. I've watched far to many movies this weekend and disc golf is out of the question for a while. There is a very,very minimal chance this is related to arthritis, but reality and intuition tell me otherwise. If the MRI reveals a change in the tumor, or multiple tumors in my hip joint, then we anticipate the treatment will be radiation. This does not scare me at all. As a matter of fac,t I welcome it if it means the pain goes away.

Those of you that know me well probably tire of me pointing to the irony of events. I hope this one make you laugh. On Friday, as I prepared for the MRI, the technician asked if I wanted to listen to music during the procedure. Sticking with my latest musical fetish, I chose classic rock. About 15 minutes into it, what song do you think comes on? None other than the Blue Oyster Cult classic 'Don't Fear the Reaper'. I'm pretty sure the laugh that I let out was heard by the technician in the other room!

'Everybody' hurts?

First and foremost, thanks to everyone for helping with Brad, the dog, dinners, and most importantly, the thoughts and prayers! I attempt to thank you, but words fall short.

Yesterday I had an x-ray of my right hip. The result was confirmation that there was arthritis but we already knew that previously. Everything else appeared stable. My oncologist is on vacation but his physicians assistant agreed the level of pain is too great to be arthritis. So Friday I'll have an MRI then Monday meet with the oncologist to decide what to do next. In the interim, I am on painkillers to try to manage the pain. I am moving slowly and carefully catering to my right hip and leg. If the MRI confirms micro tumors, then radiation will be next. As scary as that may sound, I look forward to it as long as it relieves the pain and I can put aside the painkillers.

Overall, yesterday was the best of the last four, although getting comfortable enough to fall asleep remains a challenge. Once I do fall asleep, I have been sleeping like a baby!

In closing, a brief excerpt from from one of my favorite R.E.M. Songs....

R.E.M. - Everybody Hurts (an excerpt)

............
Everybody hurts
Take comfort in your friends.
Everybody hurts
Don't throw your hand. Oh, no
Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone
.........
Everybody hurts
You are not alone

Wrong turn

Mary and I started the weekend off by spending the night on the Country Club Plaza. We had a great dinner and a few adult beverages as we enjoyed a much needed evening away.

Our elation was shorted lived however. Saturday afternoon and into the evening my right hip started to hurt. It was the same pain, with the same severity that I have been experiencing off and on for a few months. By Sunday morning it had become rather severe. Medical professionals use a 1-10 scale to ask patients to describe pain. Though I have a rather high tolerance to pain, the upper end of the scale was an area I had yet to visit.

While Advil has always proven to be the miracle cure for my pain, this time it failed me. 800mg didn't even put a dent in the level of pain. We called my oncologist and waited for the return call. The oncologist on call was very nice and suggested we try alternating Extra Strength Tylenol with Advil, option 2 was the ER.

I'm not going to go into all of the details of the past two days, I'll just say that it was at times impossible to get comfortable and there was a four hour period when I virtually could not move. Although Tylenol helped me to sleep Sunday night, that was about it. By Monday morning we were at KU Medical Center picking up a prescription for a pain killer. The pain has subsided enough that I again was able to sleep. We are now headed down to the KU Cancer Center to get blood tests, an x-ray and then visit with doctor at 3:00.

The doctor in me believes this has to be more than arthritis and related to the tumor in my hip.

This is all I know for now, details to follow tonight or tomorrow.

The Good, the Bad and the Ugly

I could have sworn I used this title before but after searching the blog, I'm in luck, the title is available!

Let's start off with "The Good" - I've been off Advil for nearly two days. After experiencing quite a bit of pain in my left hip last week and earlier, things took a turn for the better over the weekend. I still don't have full leg motion, but being able to put the Advil aside is great. I was at the point where I was taking 800mg every 8 hours. This isn't an issue once in a while, but long term use at this level can cause stomach issues. I walked a mile yesterday morning and worked out for about twenty minutes this morning. While at the oncologist's office yesterday I had my left hip x-rayed. If this turns out to be arthritis then it looks like I might add Celebrex to my daily dosage of meds. Updates on this to follow. It's strange that I am hoping that it is arthritis. The alternative is not a welcome thought at this time.

"The Bad" also has to do with yesterday's appointment. My PSA number came back and it has once again gone up a little. Currently my PSA is 129.6, up from 118.3 last month. No panic has set in, we just hope to bend the curve next month!

"The Ugly" is the fact that I will be looking for a job as of June 30th. Though I have known about this since September, there were some indications until yesterday that the date may be extended. It's not all that terrible, I have 36 weeks of severance. Additionally, and perhaps most importantly, I can switch to Mary's health insurance next year when mine runs out. With twenty years of experience in telecommunications and a pretty solid resume I have faith I'll find something in due time.

Oh but there's more...Looks like out air conditioner just went out! When the thermostat is set at 76 and the temperature in the house is 86, you know there is problem! To top that off, the U2 tour was just postponed until 2011, so much for my first live U2 experience this summer!

In closing, I want to add this cliché ridden statement; "It's all good people!" Seriously, we've been down this road before and we'll come out better when it's all through.

Angels and Demons

Part of my challenge with this blog is trying to come up with a catchy title for each post. Yes they are riddled with clichés but for the most part, I try to make the reader think, "Where the heck is he going now?". However, when they finish they then think, "Oh, I get it!". Let me be clear, I am in no way suggesting I am so clever that this happens all the time, just occasionally. Today is one such occasion.

In the past two weeks the world has lost two wonderful people to breast cancer. One was a former administrative assistant here at work. Though Mary and I didn't know her well, we knew her for a number of years. When she found out my story we had a great chat about being positive and focusing on life and not the disease. When we needed items for our golf tournaments, she was always eager to ask our VP for donations. God bless you Patsy, you are

missed and I was honored to know you.

The next loss is much, much more painful for me personally. I know as I start to write about this that I will cry. When I went through graduate school from1999-2001at Rockhurst University, there was a woman, a true angel that blessed all of us students with her presence. She was the administrator for the ExecutiveMBA department, but that was just a title. For many of us, she was like a mother or grandmother. When she found out about me she called, we talked and she too was positive, reassuring, etc. At that point in 2005 she had already gone through a bout of cancer and had been in remission for some time. We saw each other a few more times at class get togethers and she was always very encouraging to me. At some point, perhaps two years ago, she called me at home one evening out of the blue. She was just 'checking in' but I sensed something more. I didn’t push it. By the time we ran into each other at a Christmas party in December of 2008, I was aware the cancer had returned for her. I asked her about the phone call and she admitted she called to talk, to tell me. She said that after we started to talk, she didn’t feel right about passing her burden on to me. Wow, I again am brought to tears as I remember the phone call, the conversation, the meaning of her actions. Selflessness in it's highest form. I miss you Marian, your smile and your hugs.

On a completely different note, I would like to provide some insight into my current status. In my attempt to remain active I may have crossed the line to OVER active. Two weeks ago, I played disc golf twice during our tournament. I was a little sore, but so was everyone else! Last weekend I played both days, but it rained for most of both rounds. Two things happened; one I picked up some kind of virus and basically spent Sunday afternoon and most of Monday on the sofa feeling achy from head to toe. Additionally, my left hip started hurting with a bit more severity than I have experienced in quite some time.

This problem persists today. Advil helps for about 7 hours but I am trying to go 8 hours between doses. The last hour can be, well lets say interesting! Each day gets a little better, emphasis a little. I am trying to get by until Monday when I have my monthly Oncologist appointment and we can discuss further. I pray this little demon is arthritis but we shall see. It sure is putting a delay in the plans I had for the vegetable garden!

Five thousand reasons to say thank you!

The events of this past weekend were absolutely exhausting! I wouldn't however have it any other way based on the outcome!

We raised over $5,000 for advanced prostate cancer research!

On Friday night we held our second annual Friday Night in the Greenhouse event. It was a great time and not only did I run into some old friends, I met a few new ones as well. Words cannot express how grateful I am to the people at Suburban Lawn and Garden and specifically to the Stuecks. You are unbelievably generous with both your time and resources.

Saturday was our third annual Prostate Cancer Doubles Shootout, disc golf tournament. The event has grown each year and in 2010 we continued the trend. 42 teams registered for this years event. We had sponsorship from a regional micro-brewery, and the weather was perfection and the FLHW Board came through with another great lunch!

My day began at about 6:00am and I was out the door by 6:45 in order to get things started. I was well rested and still reeling in the events of the day before; the greenhouse and the fact I got another hole in one... details and an update to follow. It was a chilly 41 degrees as the golfers began to arrive, but as the crowd increased, so did the temperatures. We were able to get the first round started about twenty minutes late, but we had built a little flexibility into the schedule.

I was partnered with my friend and the co-tournament director Gary and we played with a few other friends. Our round started out normal; Par-Birdie-Par and as we approached the short forth hole we were greeted by the owner of the course and fellow FLHW board member Mark. These two, along with the five others I was playing with began to lightly jab at me regarding my hole-in-one on this very hole the day before. Cries of "Come on hot shot, let's see it again" were never ending as I walked to the tee box. I grabbed the same disc, and let go what immediately felt like the exact same throw. The result?

Another ace! Same disc, same hole, two days in a row!!

This is my disc sitting in the basket on Friday


As I've shared with others, I was mobbed! I've never been high-fived, back slapped or hugged so much in my life! It was unbelievable!

It was a personal highlight for the day but the success of the event overall was even better! Once again I met many new people and hopefuly convinced a few to get tested for PCa. We raised a lot of money for the cause and enjoyed some awesome disc golf on a beautiful, private course.

I would be remiss if I did not close with thank you to the following:
Pete
Gary
The FLHW Board; Rich, Mark, Steve, Chris
Mary
Katie
Cathy
Kathy
Bill and Bo
All the players
Tallgrass Brewery
Innova
Gorilla Boy Bags
Avery Jenkins
Johnny's Tavern
Llywelyn's Pub
and all the others sponsors

Quite memorable

I heard this on television last night; "The things you do for yourself die with you. The things you do for others lives on forever"

I did paraphrase this, and although I searched for the original source, I could not locate it. However, it remains my unwritten mantra. Even before I was diagnosed with prostate cancer, I was the type of person to jump in and help others without anticipation of reciprocal favors. This idea lives on in Faith, Love, Hope, Win. The foundation is not about helping David, it is and will remain about helping others battling this disease by supporting the research for better treatments and perhaps one day a cure for advanced prostate cancer.

Isn't it sad that so many people in our society live with a mindset completely opposite, the old, "What's in it for me?" approach to life. The gift of life is too short to live that way. I continue to believe I was put here for a reason and given prostate cancer in order to help others. "It's not all about Me", as I have said many times in the history of this blog.

~~~~~~~~~~~~~~~~~~
I am looking forward to Friday and Saturday's FLHW events. I know they will go well, but I always get nervous leading up to our events. Once again the weather is forecasted to cooperate. Saturday will be a chilly 42 when we get started in the morning, but perfectly sunny with temperatures climbing into the mid-sixties!

I walked the disc golf course yesterday with the owner and his wife. They are truly good, generous people. Even though I have played the course a dozen times I couldn’t help express my gratitude to them for the use of this piece of property. To repeat an earlier description; where the subdivisions end on the south end of Overland Park is where this property and the 'country' begins.

With that thought, I close by repeating the quote I started with because it applies to these people as well as to myself: "The things you do for yourself die with you. The things you do for others lives on forever".